Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada

Abstract

ObjectivesRespite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.DesignQualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province.ParticipantsThirty-two families (including 38 parents and 13 siblings) of CYSHCN.ResultsWe identified six themes surrounding challenges experienced by families’ in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.ConclusionsThrough the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.

Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration

“…61 New findings by SK and SP in this study suggest an ideal respite care system would embrace family empowerment practices, which is supported by MB families who emphasized the need to recognize families as experts of their own needs. 37 Also, previous qualitative studies with SPs/SKs from the United Kingdom, 29,34,60 Australia 26 and New Zealand 55 support our findings recommending improved knowledge exchange with families and within teams. 26 Notably, like our study, recommendations for improved service provision via more flexibility in amount and type of respite, 62 using an array of service options for families were made more than 20 years ago by the National Respite Care Project, wherein participants noted that 'typically, governments fund the individual plates on the buffet (i.e., single services) rather than the wide spectrum of choices that, in this case, is required.…”

“…Navigation struggles have also been identified in other Canadian 22,51 and MB 8,37 studies with respite SP and families, along with knowledge exchange gaps between families with CYSHCN and respite providers, 22,29 thus we were not surprised by these findings.…”

“…The use of informal support from extended family and friends is often sought out and helpful for families, although not always available, and becoming increasingly so as children age or conditions become more complex. 63,64 Recommendations by SP and SK in this study, and MB families 37 to provide remuneration for informal respite carers such as family and community members could address insufficiencies with respite workers.…”

“…Attention was given to their views on conditions that promote respite care that is responsive and integrative. Similar questions were asked as those asked during the family interviews 37 but tailored to fit with the nature of the SPs' and SKs' roles (see Supporting Information: Appendix A ).…”

“…This qualitative study is part of a mixed methods project, including interviews with MB families (mothers, fathers and siblings) of CYSHCN, 37 and a population-based component to assess respite services received/utilized by MB families of CYSHCN. 14 The interview guide explored participant perspectives on delivering respite care to families.…”